Saturday, January 15, 2011

The True Cost of Difference (BOB Blogswarm)

He looked pleasant enough, I guess maybe that should have been fair warning. I was motoring in my power wheelchair across a very snowy street, he was shoveling the sidewalk. I’m still a bit unused to having snow and ice under my wheels so I really appreciated what he was doing, to thank him I spoke up. ‘Thanks for doing this,’ I said and before I could say more he responded, ‘Well, I’m certainly not doing it for you.’ He muttered under his breath, ‘fucking parasites’.

Even though it was cold outside, my cheeks flushed with warm. I just kept on going. I didn’t want to stop and explain to him that I am a hard working, tax paying, citizen. Just in affirming that ‘I’m not like that’ I would be affirming his view that ‘people like that’ aren’t worth caring about or doing things for. I knew that he had measured my worth as a person based on the stereotype that people with disabilities are ‘takers’ not ‘contributors’. That any defense of myself would be one of accepting his measurement as one that makes sense. So what I work? What matters is that inherently I have value simply as a fellow human being.

I have always found, as a gay person, that elections were terrifying. I worried that the election of a political party hostile to rights for gay people would act on their prejudices and my rights as a citizen would take a back seat to the rights of bigots to hurt me. I have always worried about the tyranny of the norm or the dictatorship of the majority. While I love the democratic process, I am fully aware that there is a danger that difference will always lose out in an arm wrestle with normalcy.

Germany was doing pretty well with the concept of ‘gay rights’ until the Nazi’s came along. That didn’t work out real well. A lesson from history tells us that rights can be eliminated with a stroke of a pen, with the election of a dogmatist. The cost of being different is living forever in fear – even during times where the majority is feeling tolerant, one waits for the mood to turn. Kid yourself not, there are those working every day to deny rights and access to people with disabilities, to gay people, to people of colour, to women. Respect the energy and focus of your enemies.

But surely people with disabilities don’t have enemies like that, you say? Oh, I assure you we do. Every time a government looks for budget cuts, they always look to services to those with disabilties. Suddenly our lives become luxuries.

A wheelchair to go out? Outrageous! Why do cripples need to go out?

Staffing to maintain community access? Outrageous! We don’t like seeing them out anyways.

Let’s all chant: Congregate: Segregate: Persecute: Destroy!

Some see me in my wheelchair with their eyes but with their minds they see the stereotype of a slothful, lazy, ungrateful, benefit sucking, waste of skin. Government’s agree with that summation when they talk about the ‘cost’ of ‘care’ ... rather than the ‘right to participate'.

12 comments:

I really appreciate the perspectives you put forth as they totally relate to my experience as an obese man. There are a lot of parallels from a social justice point of view between advocacy for people with disabilities and advocacy for fat acceptance. I too live in a world that the majority, the culture, believe that I am a resource sucking lazy sloth all know good invaluable person. Remembering that simply because I'm a human being I am deserving of respect can sometimes be difficult. It's nice to have reminders from trailblazers like you.

Oh, this is fantastic. Way to make people squirm! I'm mentally noting this for future passing-it-along...

I've found myself in that position, where my first instinct is to leap into self defense mode, and tell the other person my qualifications as a hard working, contributing citizen. But then I stop and remind myself that isn't even the point. My worth comes from being another person, end of story. And all the people who aren't able to contribute in the same ways that I do, wouldn't be any more deserving of whatever offense I'm reacting to at the moment.

And now I could go off on a tangent about the deep divides within the disability community, and about how often we try to reject our membership in that community, and prove our worth by how unlike other disabled people we are.... But that's an entirely different ramble. :)

Wow, how well said. I heard an interview on CBC Metro Morning on January 12 with a doctor (I believe) who had worked in Haiti after the earthquake. He was speaking of those with spinal cord injuries who had not had care since and how it made him wonder about the ethical dilemma of who to save when you don't have the ability to ensure "quality of life. I listened in horror, thinking of the implications when we use our own measure of quality of life to determine who should live. Maybe I over reacted out of my own frame of reference, but I heard it as the subtle planting of a seed that grown fully would be a threat to many lives.

The cruelty and removal of worth that some of the benefits changes bring is frustrating and maddening. Through the perspective you have given me over the years of reading your blog I am trying my damndest to ensure that my children will understand that different is not the same as inferior, something our (UK) current government is clearly failing to grasp as they aim at what they perceive to be soft targets.

I read yesterday that a man with Down syndrome, Timothy Bradford Smith, was killed by a "caregiver" in what sounds like a group home on September 9 of last year. The "caregiver" had put the man in a prone restraint, sat on him and suffocated him. The death has been ruled a homicide, but criminality has not been determined.

What does that say about the value of lives of people with disability? If we take the "care giver" and "down syndrome" out of the story, would it be a crime? Would it have taken over four months to determine whether or not a crime had been committed?

It has been determined that the staff was not trained in restraint. It has been determined that there are other homes owned by the same company with a "litany of issues", yet they remain open.

We have a long way to go in valuing the lives of people with disabilities - a long, long way to go.

The way that people with impairments are being 're-branded'is bewildering and frightening. I had no idea that so many people felt such hostility towards a part of the community whom they seem to regard as nothing whatever to do with them. The reforms proposed by the UK government; the dreadful comments being made in certain sections of the Press, and by many ignorant individuals is unprecedented in my experience as someone who has supported disabled members of my close family for more than 30 years. Until comparatively recently, I would have said that the situation has very slowly improved for disabled people over time, but now it is all being wrenched backwards,and society as a whole is feeling less civilised as a result. I think of this 'Big Society' idea which the government is trying to sell to us. I believe that there is already much selflessness and giving going on already. It occurs to me that, far from drawing people together, the policies, the cuts, the broken promises, the perceived and actual unfairness and inequality, such as the soft measures over banks and bonuses for the rich, are serving instead to divide society with anger, fear, and prejudice.

Wow, I really struggle to comprehend how some people can be so ignorant! We are not dole bludgers or leeches - we contribute to society and the economy in a myriad of ways.

Here is a relevant excerpt from my related blog post:

"How about we make spending cuts affecting those who won't be able to fight back or make a fuss? People in the deaf community won't hear about the cuts on the radio and those with a vision impairment may not be able to read about them in the morning newspaper. Users of electric wheelchairs would not be able to climb the steps of Parliament house to protest their governments' changes and the bedridden are of no risk of protesting in the streets. Now perhaps, the cruel motives behind these cuts are starting to become clear."

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About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.